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The National Hospital Care Survey (NHCS) is a Unique Source of Data on Rare Diseases
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5 30 2022
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Source: Value Health.
[PDF-54.20 KB]
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Alternative Title:Value Health
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Description:Objectives.
To demonstrate the usefulness of National Hospital Care Survey (NHCS) for studying rare diseases.
Methods.
NHCS contains data on millions of hospital patients from participating US hospitals, including diagnoses coded using 10th revision of International Classification of Diseases, Clinical Modification (ICD-10-CM), making it likely that some of the patients have a diagnosed rare disease. The data for 2016 are unweighted and are not nationally representative. The Orphanet Nomenclature Pack (ONP) lists 877 ICD-10 codes that correspond to 536 rare diseases. Using ONP, we identified NHCS patients with diagnosed rare diseases. We demonstrate the usefulness of NHCS for studying rare diseases by reporting, for each rare disease, the number of patients in NHCS with the disease, the average number of hospital encounters per patient, the average length of hospital stay, and the percent of patients who died either in-hospital or within 90 days post-discharge.
Results.
In just one year of NHCS, we identified hundreds of rare diseases with 30 or more patients each (313 rare diseases in the inpatient [IP] setting and 273 in the emergency department [ED] setting). Although ICD-10-CM codes identify a small percentage of known rare diseases, 12.9% of IP patients and 3.4% of ED patients had a diagnosed rare disease.
Conclusions.
NHCS is a rich source of administrative and EHR data on hospital patients with rare diseases, providing unique variables and observations on many patients. Although the percentage of patients with each rare disease is low, a large percentage of hospital patients has a rare disease.
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Source:
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Pubmed ID:35654662
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Pubmed Central ID:PMC9708926
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